Living with a cochlear implant

I'm Dale, I'm 29 years old and I've been deaf pretty much all my life.

And it got worse over time, bit by bit, until I woke up one morning in 2014 and just couldn't hear at all, even with a hearing aid.

One of my biggest passions in life is music and I play guitar and piano and when my hearing suddenly dropped like that I wasn't able to really play anymore.

I tried once to have a jamming session with an old guitarist friend of mine, it didn't go well, I couldn't really hear, so I kind of had to give up some of my musical endeavours. I wrote lyrics but that's pretty much all I could do at that stage.

My expectations about the implant were more nervousness than excitement. I knew that it will be different, there'll be a lot of adjusting to do to the new way of hearing and I'd never be able to hear as well as a normal person might.

But more than that, I heard there was a chance that I still wouldn't be able to hear music very well and that didn't fill me with a lot of hope.

But I looked on the internet and there are people out there who can hear music.

One lady has perfect pitch even with her implant.

That gave me a bit more hope but I was still nervous.

When I first had to switch on I was surprised at how sudden the hearing change was.

I was able to hear a voice, that sounded a little bit like Daleks a little bit electronic maybe even a little bit slightly garbled but I could actually hold a conversation with the audiologist straight away.

But it was very different and I did need to adjust and I couldn't hear perfectly, but I could just about manage.

I was advised not to try to listen to music for a short while, while we made some progress on just hearing.

After a week or two things carried on progressing with my implant I found different voices to be easier or harder to hear than other voices, for instance, my dad's voice which is slightly lower-pitched, was more difficult to hear than my girlfriend's voice, which is quite interesting because before the sudden deterioration in my hearing and the implant I found my dad's voice to be easier to hear than higher pitched voices.

I continue listening to music and I found some ways better than others. I found the best way of listening to music was using a direct connecting cable into the implant or more powerful speakers were the best way of getting the sound.

I found it difficult at first with mixed results but I carried on, I persevered. Music such an important part of my life that I didn't want to just give up when things got difficult so I persevered and now I can listen to most genres I've listened to before with good results.

What also came in handy with practising listening to music was to have lyrics maybe in a separate web browser to a YouTube video or a YouTube video with the lyrics already on and I found that a really good way of practising listening to both music that I'd heard before and it sounded different and also, new music that I'd never heard before.

Now things have progressed to the point where I come full circle and back to playing music, guitar, piano, exploring myself as a punk artist and as a blues artist. I've even started a new project something that I didn't think I might be able to do before.

I'm not playing live just yet, but I'm really hopeful that I will be able to play live again. I can't see any reason why not.

My name is Kay, I'm 54. I have a profound hearing loss. I first noticed this in my early thirties.

I used to be quite a social animal, I'm quite extrovert, quite lively. I had quite a busy social life, I was very keen on amateur dramatics and I gradually found that as I was in plays I wasn't hearing the cast members.

I started to veer to – what I would say were quieter activities I began to take up yoga which didn't really involve much listening it was in a quiet environment. I didn't need to rely on my ears I just needed to rely on my eyes and my memory.

We went on a family holiday and my son stopped, he said 'Mum, I really think you should get a cochlear implant, you just can't follow what we're saying' and within a couple of days he'd done a lot of research on Google and sent me a lot of information about implants and I thought, yes, I'll go for the assessment.

So, I had the operation and as the day of activation came further forward people were saying to me I expect you’re really excited, and actually I wasn't excited, I was quite nervous.

After a couple of hours I went for a walk downstairs into the hospital canteen to try and get familiar with some of the sounds everything sounded completely different, not one normal sound.

The whole day had been one of very mixed emotions, I'd been nervous about having the implant activated, I was excited, I was very over stimulated by all the new sounds and then I suppose I was very tired and a bit disappointed.

After my implant had been activated I was determined to make it work, so once it was on, it was on and it was staying.

I'd been advised to follow some exercises on the computer and I did these religiously.

I haven't been able to use the telephone for about five years prior to my implant,so after my implant my speech therapist said to me let's try using the telephone. I recoiled in fear I have psychological issues with the telephone! But she said, 'no, no we'll take it stage by stage'.

Caroline went into another room and she phoned me and I tentatively picked up the telephone and she said, 'Hello Kay, it's Caroline here can you hear me?' I couldn't believe it, I could hear her as clear as a bell and we went on from there.

I knew the topic we were going to talk about and I was able to fully understand and hear probably 90 percent of what she said. It's just practice now.

All three of my children live abroad but now I can really enjoy Skype. Before, I was struggling, but now we can have really good conversations.

So now, five months down the line, what can I say about my implant? There are limitations to what I am able to do, for example, when all my friends are laughing and joking and there's quick banter going on, no sometimes I just have to sit down and think I can't enjoy this. But I don't keep saying pardon all the time and with familiar voices I don't even have to look at the person.

My name is Les, I'm 80 and I've had a cochlear implant for a year.

During the 1990s, my hearing got steadily worse and it got that the hearing aids couldn't keep up with this, even better hearing aids, and eventually in the early 2000s I gave a series of lectures, by request, to MSc students, and I had to ask students to write questions down so I could easily put the answer on the board. It was often mathematical questions where we have to write something down.

I felt this wasn't really good enough because it was time consuming and I didn't like imposing. I found that friends and family were very sympathetic and helpful and doing things like speaking slowly and carefully, occasionally writing things down, and then sometimes my wife would interpret for me. My wife and I knew each other so well I didn't have to say much to her and she didn't have to write much down in reply.

Only in 2014 my wife said something really needed to be done about my hearing. After I had the implant, I came back to St Thomas' for the switch on and, when they finally turned the sound up enough for me to hear it, I jumped. I think everyone was very pleased with it at this stage, it was working.

When the implant was first switched on, I started hearing all types of sounds around me. I think the most noticeable one was high heels clicking, which I haven't heard for a long time.

As I was adjusting to the implant I started becoming aware of more sounds like my own breathing, wind howling in the chimney and the children next door playing in the garden, but I still found face-to-face communication difficult. It was difficult to differentiate between male and female voices. Face-to-face, I did get some clues from watching the speaker's face and as time went on things did get better.

To start with I did listening practice as suggested using the computer, the online resources there and was meticulous about this and I did a session most days. I eventually found this wasn't really the answer.

I moved on and came back to St Thomas' to see the speech and language therapist. She gave me the various exercises. At first she typed so that I could see things in the laptop as well as speaking and as things gradually got better I could pick up cues by watching her face, see her lips moving and then at one stage she tried putting a mask over her mouth so I couldn't see that, to see how well I got on. I found the therapy helpful because I got immediate feedback. Where necessary things could be repeated and this did help me build up my confidence.

Overall, one year on, the implant has been well worthwhile. Things aren't perfect, the one outstanding issue is I cannot use a telephone. The feeling is I will get to the stage when I can use a telephone.

Glyn: My name is Glyn and I've had significant hearing loss since I was about 8 years old. It's quite a steep learning curve for Shona [my wife] I think, in terms of deaf awareness, and she's had the patience of a saint to be perfectly honest, and she still has, in order to get my attention when she speaks to me.

Shona: When I had a conversation with Glynn, I always had to make sure that he was looking at me and I had his full attention.

Glyn: So we can't speak to each other, or we couldn't, when we were in different rooms for example.

Shona: It could be obvious that somebody was at the door, and I'd shout, 'there's somebody at the door', but even if he was in that same room he wouldn't hear.

Glyn: Or, you know, when I've taken my hearing aids off at night time, those type of things. It took quite some time really for us to learn to live with that. I considered an implant several years ago, but at that time I just wasn't ready, and that's because I didn't think I was deaf enough and it was such drastic action to take. Switch on day was really interesting, it was and it wasn't what I was expecting, all rolled into one. When I was switched on we went through the pure tones and I can hear all of those tones, that was really exciting, but they were just tones and then we went outside and were told to come back and record what I could hear outside.

Shona: Big Ben was chiming and that's really loud and a lovely noise. So I'm asking, 'Glynn can you hear that, can you hear that?'

Glyn: And I heard virtually nothing outside.

Shona: We all tried to tell ourselves that it was going to be a little bit of time to retrain his brain and get used to hearing all these noises but I suppose deep down I thought he's going to get switched on and he's going to start to hear things and I thought it would be better on switch on day than it actually was.

Glyn: On day one when we got home I put the radio on, and it was awful and I couldn't hear anything apart from a horrible jingling high-pitch noise.

I did pretty much listen exclusively to talk radio for the first few months. Quite suddenly one sentence jumped out of the radio that I quite clearly caught. I heard it and then it was gone again it was all noise. So that morning I was listening to the radio for about 40 minutes and just one sentence appeared for me that really was a bit of a turning point for me and that was probably week one or week two.

So it was quite some time, it was at least three, maybe four months before what I could hear I would call normal myself. Before that time for the first few months I had an overlay of sound which was almost like being in a big bird cage where there are loads of birds cheeping and all of that sound was real sound that my brain couldn't actually, it couldn't pigeon-hole, couldn't determine where it was coming from and I had to hear through that sound almost in order to pick things out. That was quite frustrating and I was hoping that might clear up quicker than it did. But it did take three or four months for that to happen.

I have questioned why the radio has become a focal point and when you think about it, there is nothing wrapped round radio, there's no visual clues, you either hear it or you don't hear it. The other bits of your life, all the other things that you’re used to relying on, the visual clues and the topics of conversation, it's difficult not to do them. Slowly, I'm learning what to do but it's still very difficult not to do those things and they override the trust you have in what you're actually hearing.

And I think when you get your head round what the brain is doing to rewire itself and what you're doing to help it, to trust what you're hearing, trust the information that's given you, when you get that, really it just makes you much more comfortable and positive about the journey that you're on and about the time that is going to take for that to happen.